My mother, Sandy Ying Zhang, is my role model and my
inspiration for what I do every day. She was diagnosed with breast cancer when
she was in her forties, and fought it courageously for seven years until she
passed away in 2010.

My mother Sandy, father Xiaolu, me, and my sister Angela

There are so many stories I can tell about my mother and her
battle with cancer. Let me start with just one. Whenever she’d go to her
oncologist, she would go armed with a list of symptoms. To his credit, the
oncologist was always good about giving her a working diagnosis that made sense
of her symptoms. Still, though, she often called me to complain that she didn’t
understand the diagnosis and how her symptoms could possibly be attributed to
it. For example, she went to her doctor once because her stomach was hurting.
He thought it was due to constipation caused by her “medications”, and asked
her to take some stool softeners. She couldn’t understand why—if her
“medications” were the cause of her problems, why was he telling her to take
more of them?

I knew that what her doctor meant was that he suspected her
abdominal pain was due to constipation, which was caused by the pain
medications she was on—but either he didn’t explain this to her, or she didn’t
understand what he said. “So why didn’t you ask the doctor about it?” I would
ask.

She never had an answer to this, and it took me a long time
to see her perspective—the patient’s perspective—about why she was so reticent.
Asking her doctor questions just wasn’t something she thought she could do, and
no amount of cajoling on my part could get her to change her mind. That didn’t
mean she would eventually agree with the doctor; actually, she often disagreed,
and often didn’t follow his treatment recommendations. Throughout the entire
time she was ill, I didn’t understand the logic, and attributed her reticence
to her having come of age in China. However, I didn’t quite understand, because
she was a schoolteacher in some of the roughest parts of Los Angeles and never
had trouble standing up for her students. So why couldn’t she advocate for
herself when she needed it the most?

As a doctor, now, I see that my mother was hardly alone: many
patients are genuinely afraid to challenge their doctors. And I don’t mean
challenge the doctor as in pick a fight with them, but even to ask basic
questions. When I talk to patients about their diagnosis, they tend to nod and
agree with almost anything I say. Sometimes, they’ll ask a question or two;
very infrequently does someone actually stop me and say, “Hmm, that doesn’t
sound quite right”.

In speaking with patient advocates about this, it seems that
patients think they would be rude or presumptuous to question a diagnosis,
especially since they think they know so little. It’s quite the opposite:
doctors should WANTour patients to
ask questions and help us perform a final reality check! In my practice, I’ve
taken to asking patients specifically if they think the diagnosis I had in mind
makes sense to them, because it encourages them to bring up any concerns or
questions. Not infrequently, these questions lead to a real breakthrough and
really change their diagnosis and management.

My mother is my inspiration for writing this book because she
had gone through many misdiagnoses: initially a missed diagnosis of cancer and
then multiple other misses along the way, including, eventually, a missed
diagnosis of pneumonia that led to her death. There is nothing I can do bring
her back now, but she always believed that one person can make a difference. I
want to make a difference to my patients and encourage all of you to make a
difference in your healthcare. Speak up the moment you have a question, the
moment you don’t understand something the doctor said. Don’t let more time—and
more opportunity for misunderstanding—pass by. The work that you do will
revolutionalize your interactions with your doctor, and potentially change how
your doctor interacts with future patients as well.

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About Me

I am an emergency physician and public health leader with a passion for patient advocacy. Inspired by my experiences as a caregiver to my mother, I work to educate and empower patients and families so that they receive the best care possible. I received my medical training at Washington University in St. Louis and Brigham and Women's Hospital and Massachusetts General Hospital in Boston, and now serve as the Director of Patient-Centered Care Research, Attending Physician in the Department of Emergency Medicine, and Assistant Professor of Health Policy in the Milken School of Public Health, at George Washington University. My book is When Doctors Don't Listen: How to Avoid Misdiagnoses and Unnecessary Tests; more information at
www.drleanawen.com // @drleanawen